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vulvar adeocarcinoma metastases to bone

Posts: 181
Joined: Jan 2009

I was on this site Jan 2009 after my surgery for partial radical vulvectomy, sentinel node biopsy and followed by 5 1/2 weeks radition. Oct. 2010 on PET scan a 'hot' spot ws found in right femoral shaft, very small, so they waited 3 months did an MRI and it doubled, still very small but did a core needle bone marrow biopsy to get a sample..inconclusive. Repeat MRI end of March, no changes,repeat MRI end of June, doubled again, and now I developed a slight pain in leg, so they had to do an open biopsy to remove bone, scoop out marrow and test quickly, well it was malignant, so they put me back together and I waited another week to get final pathology results and it was the worst case scenario, vulvar adenocarcinoma metastes to the bone. The lesion moved from in the shaft to the outside of bone.
Vuvlar cancer is rare, adenocarcinoma isn't even documented, and for it to spread to bone is unheard of, not my gyn/onco, rad/onco,ortho/onco or medical/onco has ever heard of or seen it.Which now leads me to find a second opinion, still can't find a doc that has seen it, but did find a rad/onco that has seen it, but the women were 70-80, and already advanced disease. I am 58 now, in excellent health otherwise. I went to a separate medical group for second opinion, so now await their recommendations for chemo, it will be compared to what my current docs recommend, I will stay with current docs mainly because that is where I have built the trust and relationships with over past nearly 3 years. If second opinion is significantly disagreeable, they will send it to Mayo clinic for a third opinion, basically a tie breaker. My bone surgery was Aug. 30th, am doing well, but mentally exhausted with all the phone calls, etc..so tomorrow I am taking a vacation from all of that stuff and having a movie day and just resting.
I wish I had come across just 1 other woman that had a vulvar adeocarcinoma, mine was not Pagets disease, or Bartholin Gland cancer or extra-mammary. I asked about a clinical trial and was told they don't grant money to a cancer that affects less than 35 women a year, most of who die from it. I maintain a pretty good attitude about this most of the time, mostly I am frustrated because it interferes with the way I want to live my life, and now I can't work again for a while. Just when the room stopped spinning, someone started it up again.

beckyracn's picture
Posts: 324
Joined: May 2009

I'm so sorry to hear this. Hopefully the chemo will put you back into remission.

Posts: 30
Joined: Dec 2010

Truly shocking that they don't want to spend money because it affects less than 3 women a year!! We also deserve a chance.

Keeping everyone in prayer.

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